Likes: Coloring, playing with playdough, having others read stories to her, riding her bike and power wheel, going to pre-k, and watching YouTube kids and Disney+. Her favorite color is purple.
Dislikes: Shots, blood draws and oxygen in the nostrils. She does not like to eat meat, unless its chicken nuggets. But she’s 4, so she likes almost everything!
Pets or Favorite Animals: She loves her dog, Minnie, so much. However, her Stormtrooper is her absolute favorite lovey. She sleeps with him every night, she takes him to all her CHOR appointments, tests, surgeries and admissions.
Hospitalizations: She has been through multiple tests and evaluations, including several sedated MRI brain scans, CTs, full body x-rays, blood work, and vision tests. Gracelynn has had 2 brain surgeries, 1 skull vault expansion surgery as well as installing hardware (distractors), and 1 surgery to remove distractors from her skull.
Clinics Attended: Neuroscience, Neurology, Cranial Facial Plastic Surgery, Cardiology, Endocrinology, Feeding Clinic, Opthalmology.
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As part of a big family that loves superheroes and Star Wars, four-year-old Gracelynn calls herself “Wonder Woman!” Her parents wholeheartedly agree.
“Gracelynn has a strength I’ve never seen in a child who has been through all that she has been through,” her mom Diana shares. “She’s always happy, smiling and in good spirits, even on the days she was going in for surgery.”
As a busy pre-k student, Gracelynn is bright and inquisitive and enjoys learning new things. She also loves spending time with her siblings. She likes to color and play Legos with her older sister and get piggyback rides from her teenage brother. She also has a younger brother who is experiencing developmental delays, but with the help of therapies and interventions, is making strides. Gracelynn loves doing everything her little brother does, and vice versa.
Throughout Gracelynn’s complex medical journey, her family draws great strength from their faith. “We don’t know if this is just the beginning of her journey, or with what’s been done already means this is near the end of her journey. Time will tell if she needs additional brain or skull surgeries, or if another part of her body has been affected or will become affected,” Diana explains.
Gracelynn’s family is grateful for the support they receive from Better2Gether. “Between texts when I need them and monthly support meetings, my husband and I know we’re not the only parents going through a tough journey with our child,” Diana says. “We feel connected to our ‘extended family’ when we are with the other parents (served by Better2Gether). They aren’t going through the exact same thing we are, but they jump for joy over the smallest accomplishments that most parents take for granted.”
